Not Moving On

In October of 2013, I prayed a very sincere and naive prayer. “God, do whatever it takes to increase my faith.” I wanted to truly know that God heard me and that He could change my circumstances and my life, and I wanted to show Him that I was willing to follow where He lead. Life had not always been easy, but I have been blessed and it was always easy to follow God because my faith had never been tested. But I was longing for a deeper relationship with Him so my prayer for increased faith felt like a good next step.

In the time since that prayer, we lost a baby to miscarriage. My grandma who I was very close to also died. We chose to adopt a baby with special needs (something we never planned to do) and also almost lost him to death before his adoption was even finalized. I had the privilege of helping to start two completely new ministries for families who are among the most deeply hurting in our community. We lost our daughter Lily to stillbirth. We have had 4 foster children in our home, all who were deeply hurting. God has given me bigger opportunities to minister to hurting people than I ever expected and all of it was because I was hurting as well.

I could speak more about each of these experiences that I have been through and talk about how my faith was increased through each of them, but I don’t have time to write a book. All that I will say is that sometimes I thought that God had left me completely, only to discover that He was always there even when I was too lost to see Him. I truly believe that God does not cause terrible things to happen in our lives, rather, He takes the terrible things that happen and is able to use them for good and for His glory if we allow ourselves to be used in our pain and grief.

The healing and faith that it took to turn back to God and to trust him after Lily died almost broke me, and it has been a beautiful and messy process of healing to get to know God’s heart in a different way through my grief. I have recently been thanking God that He answered my prayer to “increase my faith no matter what it takes.” I must be a slow learner because it has taken a LOT to teach me.

As I write these thoughts, they are a bit jumbled in my mind. I’m having a hard time articulating with my small vocabulary the feelings that have been swirling inside of me in the last few weeks because we are stepping into yet another adventure that God has orchestrated for us. A few weeks ago we found out that we are once again expecting a baby. This news comes with surprise, excitement, fear, hope, anxiety and much grief as we remember the baby we most recently lost and process what this could mean for our family, good or bad.

Two dear friends have shared some words of hope with me that I cling to. The first is that I don’t have to move on. This new baby does not mean that I have to leave behind my grief for Lily. She will always be a part of me, part of our family, and we can move forward and love life again, but we don’t have to leave her behind or have a new baby take her place. The second is that Lily is rejoicing about this pregnancy along with us because she will be getting a new brother or sister. To take this one step further, I find comfort in the fact that if we are not meant to meet and get to know this baby here, he or she has a sister that will take care of him or her until we meet again.

I asked God to increase my faith and I think that what I was initially asking for was for Him to show me that He can do what I ask him to do. I now know that He can. But bigger than just my need for Him to show His power, and something that I didn’t know I needed to ask for came through our deepest loss. My faith was truly increased simply because I have had the opportunity over and over and over again to see that He is who He says He is. Our God is the same yesterday, today and forever. I now have total faith in this. And it gives me hope for this new baby and for all of us.

Scott and I have had 4 miscarriages, one stillbirth and 3 healthy children during the course of our marriage. We know that there is no guarantee of the future of this baby here on earth. But one thing that I am sure of is that our true home is with the Lord and we are promised that we will have an eternity with him. I believe that the 5 babies we have lost are alive and well and are serving their true purpose that the creator of the universe made them for. Their lives are not at all wasted just because they didn’t have time here with us. While we bide our time and do important work here, I don’t think we have even an inkling of the good things that God has in store for us when we pass on. This changes my prayer for this pregnancy and our baby.

I desperately hope that we have the opportunity to meet, raise, spoil and love this child like crazy. I pray for these things daily. But my faith in God doesn’t say that against our past odds, this baby will be just fine here if we have enough faith and pray hard enough. My faith says that God has shown me that He is the same yesterday and today and if His heart never changed during my deepest hurt, it will not waver if we lose this baby as well. And, this baby already has a wonderfully important purpose, whether part of that is here on earth or not. Death is not the end of the story, it’s only the beginning.

We would love prayers as we go through the “firsts” after losing Lily. The first time stepping back onto the OB floor at the hospital. The first ultrasound in the same place where we found out that her heart was no longer beating. The first time sharing this news since it ended in so much pain the last time. The fact that this baby is due 3 days after her birthday. These are the things swirling around in my mind and causing me grief and anxiety.

We choose to share our news early because we don’t have an end of first trimester “safe zone” to reach. We thought we were in the safe zone when we lost Lily. We know that even with an early loss, we will need prayers and support. Each OB appointment will be difficult until we hear the heartbeat or if we don’t. Each twinge of pain or discomfort causes anxiety. Each time I am not feeling sick to my stomach causes anxiety. Trying to plan for a new baby while simultaneously trying not to plan for a new baby is wreaking havoc on my emotions (along with the hormones!) and I know that we will need prayer support.

So, in the midst of all of this grief, I have decided to make the conscious choice to celebrate and be excited about this baby each day that I am still pregnant no matter how long that ends up being. I’m not looking too far ahead, but I’m looking forward to getting to know every detail of him or her, whether it be here or in heaven. And I will still selfishly keep praying for health and safety and the hope that we get to know this baby while we are still here. But either way, God’s got us and He never fails.

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Blessed are those who mourn…

On April 11th, 2013, my great-grandmother, Lucille Stout, passed away. She lived her whole life with a passion for the Lord and raised her children, grandchildren and great-grandchildren to know about grace, love and salvation. Her life was a long and beautiful testimony that following God no matter what is worth the payoff. One night, at the age of 98, she went to sleep and never woke up. She had no pain. She didn’t suffer from disease, she didn’t have fear. She simply fell asleep and met Jesus.

I grieved deeply for her, mostly because her life was so rich that I regretted not getting to know her better. I wished that she would have been able to see my kids get older, to meet my youngest son who hadn’t made his entrance into the world and to see the legacy of what her faith had produced. I also simply missed her face and especially her laugh.

Jesus promised us in the Sermon on the Mount that those who mourn are blessed because they will be comforted. It was easy to feel God’s comfort with the death of my great-grandmother. Although I missed her terribly, I knew that she lived a wonderful life that was rich in love, laughter and faith. Her death coming so peacefully made the comfort sweet because I felt that God had rewarded her life of service with an easy transition home.

On August 5th, 2015, my grandmother, Ruby Stout, passed away. Again, she was a godly woman who raised her family to know that Jesus loved them more than anything else in the world. Grandma came from an abusive home. She was often left alone with her younger siblings for a week or more at a time to care for them when she was under 10 years old. She never shared the details of her abuse, but told us only that once she met Jesus in church as a child, she promised never to treat her children the same way that she was treated, and she never did. She exuded God’s grace through taking care of children, her kids and grandkids and all of the little ones that she taught in Sunday school.

Grandma’s transition to heaven was harder. She developed dementia and we watched as she became forgetful, lost words, and settled down peacefully into old age. As a music therapist, I had the opportunity in the past to work with a terminal patient who had dementia and a history of child abuse. She used to hide in closets at her assisted living facility and cry because she thought her father was coming home to beat her. Without telling my family, I begged and begged God to not let this same thing happen to my grandmother. This was the comfort that I found in her transition as she quietly succumbed to confusion and remained blissfully unaware. God had heard my prayer and provided her comfort.

But Grandma started to forget that she couldn’t walk well. She was diagnosed with fibromyalgia and spent the last years of her life in continuous pain. I was angry that after a life of service to God, she had to struggle so much. It seemed unfair that God would not reward her for a life well lived. One night, she got up to use the restroom, forgetting that she couldn’t walk without her walker and fell, breaking her hip.

The family came from all over the country to visit and see if she was okay and we learned that she would not be sent to recovery. She was too frail to have hip surgery, she developed pneumonia and even if she did recover, her memory wouldn’t allow her to do the necessary therapy to recover physically. Hospice was called in. It was time to say goodbye.

We sat by her hospital bed for days. Each day, the doctors would come in and tell us that “this would most likely be the day,” and then she would last the night. I went from praying that God would let her live to praying that he would take her fast so that she didn’t have to suffer. We sat and watched her breathe, and each time her breath would pause, so would ours until she took the next breath. We pushed the morphine button over and over again as we saw it start to lose its effect and she winced in pain. We sang hymns as a family and prayed over her. We told her that it was okay to go home and eventually, she did.

This time, I felt comfort in the fact that she was finally at peace after so many years of pain. I felt comfort in knowing that she was in heaven. But at the same time, small cracks were beginning to form in my faith. Why would God let her pain go on for so long? Why would someone who touched the lives of countless individuals through her years of faithful service have to endure such hardship over and over in her life? I also had a hard time reconciling the fact that one of my biggest cheerleaders, spiritual mentors and friends was so suddenly gone.

On November 24th, 2015, my daughter, Lily Grace, passed away. I delivered her the next day after 11 hours of labor. We went in for a routine check and the doctors couldn’t find her heartbeat. Much of that news being delivered was a blur, but I remember the ultrasound technician searching for what felt like an eternity while the doctors, nurses, Scott and I watched in silence. Finally, one doctor looked at me and simply said, “I’m so sorry.”

Over the next few hours, I was taken to labor and delivery and given a room, medicine was administered to start my labor and we waited. My parents came in and prayed with me before they left to babysit my other kids but I did not feel God in that moment. I labored all night and early into the morning. As Scott slept, I felt utterly alone other than the occasional nurse peeking in to check on me.

Lily was born just after 4am the next morning. She was dressed in a gown that the hospital had saved for such an occasion and we were able to spend two precious hours with her on this earth. We told her how much we loved her, took pictures of her, held her and cried tears that could never convey how we were feeling. Scott and I spoke words to one another that were too intimate to share with any other human being about life, love and faith; words that can only come from two people experiencing the same unimaginable loss.

We said goodbye to Lily two hours after saying hello. I watched her being gently carried out of my hospital room and there was no comfort. My rejection of the picture that I had always had of God being our loving father was immediate and intense. When I was discharged from the hospital carrying only a teddy bear and a box of Lily’s few tiny possessions that the hospital had given us to remember her by, I was utterly alone and could not be comforted.

For months I waded through deep grief. For those who have never experienced this type of loss, it feels like the world is moving too fast around you. You are in it, but not a part of it. I knew that I had to get up and take care of my other children, my home and my responsibilities, but all of it was done through a thick veil that was the new way I saw the world. I couldn’t move fast enough and everything I did felt like a heavy weight on my shoulders. I never knew that grief could cause physical pain in my chest until I lost Lily. I was trudging through life but not living.

I didn’t go back to church until our Christmas Eve service a month later, but that only brought more pain as I kept hearing about the “baby in the manger” and pictured my own baby and thought about how this Jesus who came to save us chose not to save my daughter. I was so angry with God. I spent hours crying alone at night when the rest of the family went to sleep. I couldn’t take a shower without crying. I couldn’t drive my car without crying. I couldn’t sing in church without crying. I couldn’t pray without crying. So, I cried and cried and cried.

I went through all of the stages of grief, begging God to reverse time and let Lily live. I yelled at Him in anger. I shared with him all of my sadness and I held on to Romans 8:26 that says, “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” I groaned into my pillow without the vocabulary to convey my sorrow and hoped that God heard my pain, but I did not feel His comfort.

I started to question my faith. If I truly believe in God and that He is all-powerful, I have to believe that He could have saved my child. If I believe that God is the loving father that I had always known him to be, how could He let Lily die? If He really does love her (and me) as much as the Bible says that He does, why take her and leave me with such unbelievable pain? If He only wants good for his children and wishes no harm upon them, maybe He isn’t strong enough to intercede. What if He doesn’t really exist at all and I will never see my daughter again?

I was scared by my own questioning and my loss of spiritual direction in life. I was floundering and couldn’t hear God’s voice at all in the midst of my deep mourning. I began to search for answers and came back to a story in the Bible that I had heard many times but that had never resonated with me before. In Mark, Chapter 9, a man comes to Jesus and asks him to heal his son who has been possessed by an evil spirit for years. The father begged, ““…if you can do anything, take pity on us and help us.” “If you can?” said Jesus. “Everything is possible for one who believes.” Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”” (Mark 9:22-24)

This prayer became the only words that I knew to pray. “Oh God, I believe, but you’ve got to help me overcome my unbelief.” And slowly and painfully, I met God again. I wasn’t less angry with Him, but I knew that He was listening and answering my prayer to know His presence again in my life and help me with my unbelief. I slowly reconnected with my faith and began to find more words to pray. They were all angry words but at least I knew that they were being heard.

I had a life-changing moment about 8 months into my struggle with God in the midst of my pain. I was doing some chores around the house alone (and crying, as I did every time that I was alone) and was praying and yelling at God. This was a pretty typical scenario at this point in my life. When I felt sad, it was God’s fault and I had grown accustomed to my prayer time consisting of phrases like, “You could have stopped this from happening. How could you do this if you love me? Why do we have to go through this intense pain?,” and always ended with, “Why didn’t you save her?”

On this particular day, I had fallen to the floor and sat there, crying my eyes out, and yelled, “Why didn’t you save her?” I heard God’s voice simply say, “I did.” It was an audible voice in the room with me and it was probably the only time in my life that I will ever hear God that plainly. I heard with my ears, not just my heart, “I did,” and all of my anger came crashing down around me. I was overwhelmed with sudden clarity of the whole gospel account of Jesus and his life, teaching, death and resurrection.

In that moment, I learned the crux of God’s plan for redemption and salvation. I had heard it so many times before, but it was different after the loss of my own flesh and blood. I sat there and cried as God gently reminded me through scripture that I have known my whole life that Jesus conquered death, hell and the grave. I had always been amazed by this but was looking at it through the lens of Jesus’ resurrection and how amazing it was that He is alive.

In this moment, God showed me that this conquering of death was not Jesus’ death, but my daughter’s. He did indeed already save her, and it was through Jesus’ death and resurrection that I will see her again. I also saw the resurrection account through the eyes of the father rather than the son for the first time. Losing my child was the most unimaginable pain that I had ever experienced. Jesus went through physical pain, but God knew how I felt because it happened to Him too, and He let it happen willingly so that I would be able to spend eternity with Lily.

So the question remains, in light of all of the pain of loss, how do I feel blessed to mourn? Because when we enter the deepest, ugliest, darkest parts of our own souls, when we hit bottom so hard that we wish for death, when we question God’s love or even His existence but have the courage to invite him into our pain with us, we understand more fully God’s intent for all of creation. Death is the worst pain that can ever happen to us, and Jesus conquered it, not only for Himself, but for all of us. Death is not the end of the story for any of us.

I was pondering these thoughts on grief and mourning in my heart again recently and realized that my great-grandmother, my grandmother, my other grandmother who is still living and I all have something in common that I never thought of before. We have all lost children to stillbirth. I have known about their losses my whole life, but hadn’t thought about them since my own since their generation didn’t speak about stillbirth openly. They are now reunited with their babies in heaven, something that I long so desperately for.

These women stand out in my mind as my spiritual leaders and mentors and for a split second I thought, “Why can’t I handle the loss of my child with grace and dignity and move on like they were able to.” Then I remembered that when we closed my great-grandmother’s casket and said goodbye, the last thing that I saw were her wrinkled, age spotted hands holding a tiny pillow with her baby’s name on it. She had lived for over 70 years with the pain of losing her child and had never gotten over the grief. She requested to be buried with that pillow because it was all that she had of him in this world.

So how does God comfort people who are in such extreme mourning? Before losing Lily, I thought of comfort as the knowledge that my great-grandmother didn’t suffer or the knowledge that my grandmother was no longer in pain. But this is not real comfort. This is consolation and self-soothing information. Had I not lost my daughter, I would never understand true comfort that only God can give. It has nothing to do with whether I feel sad or not. It has everything to do with the cross and the fact that if I never feel okay with the loss of my daughter in this life, the cross made this life only the beginning of the story.

A few people have asked me how I can continue to serve and love God after all that I have been through and after He let my child die. There is no easy answer. I didn’t just wake up one morning and decide that everything was fine. I have struggled with my faith so much through this experience of loss. But God has heard every word and has not left me in my grief. I have found only one explanation for allowing this loss to occur and it is found in the book of Luke.

Jesus’ words from Luke 17:20-21 say, “The coming of the kingdom of God is not something that can be observed, nor will people say, ‘Here it is,’ or ‘There it is,’ because the kingdom of God is in your midst.” I have wrestled with the reason for loss and attributed it to this fallen world and for a time told myself that I will just hang around because I have to and not be a part of a sinful world that would let things like children dying happen. But Jesus says that the kingdom is here now. There is still beauty in our fallen world, even if the only beauty we see is true comfort in deep pain.

As for why God would create a child only to let her die before being born, I find my answer in

1 Corinthians 13:12 that says about life after death, “For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.” Lily knows fully and is fully known by God. I am certain that she is living her true life and doing what God created her to do. God didn’t create her to let her die. He created her for a purpose that she is fulfilling already. I am the one who doesn’t yet know what my life in eternity is for.

This grief that makes everything feel like I am moving slowly and not seeing clearly is analogous to the way we live before resurrection. We have the opportunity to glimpse God and we “groan as in the pains of childbirth” (Romans 8:22) waiting for Him to make all things new.

Blessed are we who mourn this life because there is something so much better waiting for us. Comfort is a promise from God and it is guaranteed when we see Him face to face. Until that time, God is the same yesterday, today and forever no matter our circumstances.

Easter Lily

IMG_0282 (4)I haven’t spoken much about our daughter Lily or our stillbirth experience, mainly because it is still too painful to talk about most of the time. But throughout the last few months since we lost her, friends from my stillbirth support group have told me a lot about their stories and how sharing helps them heal. So, for anyone out there who has lost a child to stillbirth, miscarriage or in any other way, I hope you get a chance to read this. I don’t have any answers as to why all of this painfulness happens, but maybe there is comfort from knowing that another person understands how you feel and that you are not alone in their loss. As I have grieved over this Lenten season, a lot about Easter, God’s love and my faith has been challenged. But I know that even though God would never give us terrible experiences to teach us, He is able to use our deepest pain for His glory. So here goes…

Stillbirth is messy. It is deep, gut-wrenching, hard to breathe grief that seeps into your life and clouds your perspective on everything you experience. It is messy because everything that used to be black and white in your world turns all different shades of grey. You can’t make easy decisions anymore. All of your life choices were being planned with another little person in your mind and your heart and trying to make them with this unbelievable loss skews your decision-making skills.

All of the medical professionals keep asking me if we will try again to have a baby because they want black and white as well, they need a plan, but how can you make any decisions for the future when your world has stopped so suddenly? Well meaning little elderly ladies stop my family all the time and ask how many kids I have. More grey area. Do I say four and feel like I have betrayed Lily by not remembering and sharing her? Or do I say five, because the next inevitable question that comes is, “Aww, how old are they?” When you start that answer by saying that one of them is in Heaven, talk gets awkward fast. People aren’t prepared for ugly honesty when they make small talk. It is offensive to a lot of people to answer honestly when they ask you how you are doing.

We were looking at houses before Lily died, and I just can’t bring myself to do it now because who wants to buy a house for a family that is suddenly not expanding? Or a new vehicle, or new baby items? Out of the blue, life is moving in reverse. We put Lily’s baby crib together the day before she was born and then came home only to have to take it apart again. There is an entire “unplanning” of your life that happens that you don’t see coming and that is always slapping you in the face at odd moments.

Some people mean well but don’t seem to know what to say. Many of my friends have been amazing through my grieving and I am so thankful for that. But I still occasionally get condolences like, “At least she isn’t suffering and is in Heaven,” to which I smile, but I really want to scream, “Really? Would you say that if it was your child who just died?” Or people look my way but look away when I make eye contact. Being avoided because it makes people uncomfortable to talk to you is also hurtful, but at the same time, what is there to be said between you? When you lose a spouse, you are a widow. When you lose your parents, you are an orphan. When you lose your child, what are you? There is no name for you because your kids aren’t supposed to die before you do.

There is a lot of guilt that comes along with stillbirth as well. No matter how many times doctors tell me that it’s not my fault, I stay awake at night wondering if there was something that I could have done differently. Many of the moms I have met through this loss share the same guilt, even though we know that realistically it is unwarranted. I feel guilt that I am not happy for my dear friends who are expecting babies of their own. I am genuinely glad for them, but between remembering each time that I see them that I should still be pregnant as well and the worry that comes from loving them and thinking, “what if it happens to them too?,” I can’t feel excited. I feel guilty that our other kids who shouldn’t know so much about death and loss have experienced it so much in the past couple of years. I feel guilty that I am so angry sometimes. I feel guilty that I have grieved so much more for Lily than for the other four babies that we have lost to miscarriage. Their lives mattered just as much, but I didn’t get to name them, see them, touch them. I feel guilty that I was lamenting being pregnant with four kids at home and how hard it was just days before Lily died when now all I can do is desperately wish that I was tired with a huge belly and swollen ankles.

It is difficult to experience any kind of loss, but I think that stillbirth is unique in that I knew this little person SO well and no one else knew her at all. Life has moved on for everyone around me and I feel like I walk through it in a fog sometimes; everything is the same way it used to be, but everything is completely different and will never be the same again. I will never be the same again. I don’t think I’m supposed to be. But experiencing the biggest loss in my life without other people knowing this little person is lonely. I want so desperately for people to know how beautiful Lily was. I wish they had seen her little upturned nose that we call the “Moilanen nose” that all of my kids have. I wish that, even though her whole hand fit on the end of my finger, people knew that it looked just like her big brother Isaac’s hands. I wish that people could have experienced her so that this loss didn’t feel so much like solitary confinement.

When you lose a child, you brace yourself for deep grief, but there is a lot that you don’t see coming that is almost as hard to deal with as the loss itself. The first was being wheeled out of the hospital 13 hours after giving birth with nothing but a memory box and a teddy bear in my arms. I was back in the clothes that I had worn to the hospital, when I still thought that we were just there for a routine visit for my son. It felt like the events of the last two days had never happened. Then came the realization that just days later we had to go back to the same hospital for another appointment for our son, and keep going back week after week, month after month, year after year to the same triggering sights, smells and sounds that we experienced during the death of our daughter.

Then my milk came in, but there was no baby to feed. She was really gone. Then there was the day that I put on a pair of my socks and realized that they were the socks I had worn and stared at the whole time I was in labor. Then came my first period, back with a vengeance and reminding me of the trauma of labor being induced and bleeding and contracting, knowing that at the end of it all, I would meet my baby, but she wouldn’t be coming home with me. Then came Thanksgiving, then Christmas, family birthday parties, pieces of my life that were suddenly not what they should be. Next is my due date. After all of this grief, Lily shouldn’t even be here yet, but the time from when we met her until now feels like a lifetime ago. How will I get through the day that she was supposed to join us, alive, healthy and completing our family?

So what does this have to do at all with Lent and Easter? Why do I mention Easter at all? I have been very angry with God lately, just like I was last year when William almost died. What is there to celebrate this year as we face more holidays, milestones and life events that will not feel quite right, not whole?

I looked up “Easter Lily” online today and read about the origins of why we as Christians adorn our churches with Lilies on Easter. One account said,

“Often called the “white-robed apostles of hope,” lilies were found growing in the Garden of Gethsemane after Christ’s agony. Tradition has it that the beautiful white lilies sprung up where drops of Christ’s sweat fell to the ground in his final hours of sorrow and deep distress. A mark of purity and grace throughout the ages, the regal white lily is a fitting symbol of the greater meaning of Easter. Gracing millions of homes and churches, the flowers embody joy, hope and life. Whether given as a gift or enjoyed in your own home, the Easter Lily serves as a beautiful reminder that Easter is a time for rejoicing and celebrating.”

We named our daughter Lily Grace, and I can’t think of anything more fitting than a name that reflects both sorrow and deep distress as well as joy, hope and life. I choose to have my Lily remind me of the rejoicing of Easter and the grace that we didn’t deserve but were given anyway on that day. A year ago, I wrote about Lent and spoke to the fact that we had almost lost our son to his illness. We grieved deeply then and a year later, we are grieving even harder through Lent. At Lily’s funeral, my Dad mentioned that as we are nearing Easter, it will never have the same meaning that it did before because now we have a personal stake in Heaven and know that Easter means that we will see Lily and our other kids again. My Lily has brought deep sorrow and distress, but even so, I would go through all of this again to be able to have her for the time that we did because I know that joy, hope and life are still to come when I meet her again and that she has already achieved them all.

I have heard the crucifixion and resurrection story more times than I can count and each time, I have focused on what Jesus did for us by allowing Himself to be tortured and crucified all because He loved us so much. But what I didn’t focus on enough is God’s part of the story. We always talk about sadness surrounding God at the death of His son, but to me, I always thought, “Well, at least He already knew that it would only be 3 days and then Jesus would be alive again.” Wow my view has changed! I would die for my kids, just like any good parent would and just like Jesus died for me. But losing my child, even though I know I will see her again some day in Heaven is a different type of loss that is really indescribable. A piece of me is missing and it will be until I get to Heaven.

When we finalized William’s adoption, I talked about how God gave me new clarity on what it meant to be adopted by Him. It was a beautiful gift that He gave our family in showing us what adoption actually meant and how much He actually loved us. We could finally understand because we loved Will with a firy passion just like our other kids. We felt so blessed to go through the grueling process of adoption in order to experience that understanding.

Now, as I sit here in the ruins of the plans and dreams that I had for our family’s future, I have to be in awe of God in the midst of it. I can never thank Him enough for Heaven, for taking care of my daughter until I see her again and for not only knowing exactly how I am feeling right now in this seemingly incomprehensible loss, but for going through it willingly so that Lily and all of us are able to live forever. This time, I wish with all my heart that we didn’t have to walk through our circumstances in order to gain understanding, but I know that God walks with us. I have cried, screamed, shaken my fist at God a lot recently for all that we have been through. But in the middle of it, He tells me that He truly knows; more than the moms in my support group, more than the friends and family who have stood by us and carried us, more than even myself.

I will continue to grieve the loss of Lily my whole life, even though I know it will not always be this intense and overwhelming. Through the years I will grieve the holidays, birthdays, graduation, wedding, grandkids, everything that we lost when Lily left us too soon. And most of all, I will grieve every day that I don’t get to see her, touch her, hold her again. Two hours was just not enough. But I will celebrate Easter in the midst of my grief because I serve a God who loves me and all of my kids so much that there is nothing that He won’t go through for me, even in all of my weakness and despair, to bring me safely to joy, hope and new life. Happy Easter to all.

I Planned My Trip To Holland

For those of you who have never read the story, “Welcome to Holland,” it is a beautiful metaphor of the journey that parents go on when they find out that their child has special needs (I encourage you to check it out here: http://dsnetworkaz.org/holland/). It talks about how even though you were planning a trip to Italy but ended up in Holland instead, Holland is beautiful in its own way and it ends up being okay even though it wasn’t what you were expecting.

We chose Holland. We adopted our son who has Down syndrome. We fully expected his therapy sessions, his slower milestone gains, his amazing feats of double-jointedness and his beautiful little almond-shaped eyes. But somehow Holland ended up simply being stop number one on our journey around the world. We never expected his cancer, his kidney failure, his seizure disorder, his catheters, his feeding tubes and all of the other issues that he has that have nothing to do with his Down syndrome.

We chose Holland. I was angry. Why couldn’t we just settle there? “God, you asked us to go to Holland and we obeyed. Why are you doing this to us?” Instead of Holland, we spent hours, days, weeks at the hospital. They were our slums of Calcutta, our journey of sickness and pain. I just wanted Holland back.

But then something else happened. We moved on. We began to climb. When my son said, “mama” for the first time after we were told he would never talk, we breathed in the clean air of the Swiss Alps. We made it to the top of the mountain and we were stronger for it. We saw beautiful scenery again and hope for our future travels.

We started in Holland, but then we headed in many directions, meeting other amazing travelers on the way. Parents who were also going on this world tour who had been to more destinations than us gave us courage, advice and a helping hand. We saw the beauty in their travel-worn faces. We felt their strength as they pulled us through the deep valleys. Our difficult journey around the world began to actually feel like an adventure.

We found rest in our friends, family and church. They were our soft and warm beds after weeks of backpacking through the muck and sleeping on the ground. Our doctors, nurses and therapists were our tour guides, taking us through difficult journeys so that we could reach beautiful destinations. And slowly, Holland didn’t seem so important anymore.

We chose Holland, but we didn’t stay. I’m so glad that we left. Being in one place forever gets boring after a while anyway, right? Becoming world travelers has made us stronger. We have pushed ourselves to the limit to find out that we are brave, we are smart, we are capable parents who have a difficult journey ahead. But we aren’t traveling alone.

So we’ve thrown away our map. Goodbye Holland! It no longer matters where we go. There is no final destination because this journey is one that takes a lifetime. It only matters that we are traveling together.

Special Needs as a Model for the Christian Church Collective

I am blessed to have friends from all walks of life. You are straight, gay, male, female, old, young, of many religions, atheists and from every political perspective that I can think of. I feel like this offers me an interesting perspective when major US and world events occur. I don’t intend to take sides on any of the political topics that I mention. This post has nothing to do with that. Instead, it has everything to do with the Christian response to politics as a whole and what our role is in this world as followers of Jesus.

I know that this viewpoint will cause a lot of disagreement, but I propose that all of the arguing between Christians when it comes to right vs. left, gay vs. straight, welfare, gun control, etc… is all a huge bunch of crap. It seems that Christians grab on to these concepts and base their faith around them rather than Biblical teaching.

“Well, if you’re a Christian, then surely you vote for __________.”

“If you are a Christian, you must be against _______ group of people.”

“Come on Christians, let’s make our mission to go and protest ________.”

Come on! I get so angry with how much effort Christians put in to telling people that they are wrong. When did Christianity change from loving like Christ to getting to choose who is worthy of the Gospel? Why do we always feel the need to be right all the time? To tell others what they are doing wrong? To fight about every little thing that we disagree with?

I know that some of you will say, “But you can’t really think that these issues aren’t important?” They are important in terms of human rights, equality and how we help those in need in our country. However, they are NOT important in terms of how we view people or how we love them. And I truly don’t think that they are important to God in terms of who gets into heaven and who doesn’t. I often feel that it must hurt Him so much to see people condemning one another in the name of Christ for things that just don’t matter in the grand scheme of our lives.

What does this have to do with Special Needs? I’m glad you asked! I am so blessed to be the director of a program for families with special needs. I often get comments from people telling me what a nice thing I am doing for those people, or how my job is so nice and there needs to be more people like me. But, what no one understands is that I am one of the privileged few who gets to see a glimpse of the way that the Church Collective should work.

Before anyone gets any ideas that this is going to be a fuzzy, feel-good special needs story, let me give you some perspective on some of our major moral, ethical and philosophical issues in America. And let me let you in on a little secret. NO political perspective is in favor of people with special needs. There is no right or left. Only, special needs families vs. the system as a whole. For example…

-We debate gay marriage while people with special needs aren’t able to marry ANYONE, EVER, because there are not enough programs in place to help them live successfully as independent adults.

-We have lengthy debates over who wore what to which award show when some people with special needs wish that they could dress and bathe themselves.

-A pregnant mom finds out that her baby has Down syndrome. She loves this child already. One side tells her that her only option is to abort because the baby isn’t their view of perfect and therefore is of less value than other children and not worthy of life. The other side tells her that she will go to hell if she aborts so she must keep the baby, but she better not ask for help when the baby is born. Funding is being cut for that. If she does ask for help, they will make her take drug tests and treat her like a second-class citizen for not being able to do it on her own before they will help the baby that they told her to keep. They are pro-birth, not pro-life.

-We debate about racism and kill one another over the color of our skin while some people with special needs wish that they could see what their friends and family look like.

-We debate about whether or not everyone in the Good Ol’ US of A has an equal shot. Guess what? They don’t. Hard work and persistence don’t pay off if you aren’t able to advocate for yourself.

-We argue about healthcare and call for reform while people with cognitive impairments are being denied organ transplants because of their IQ score, not because of their insurance plan. They die while we argue.

All of this being said, look at the first century Church in the accounts in the Bible. It was not made up of scholars and politicians. It was made up of people in desperate poverty, people living in fear, people being persecuted unto death. Also, it was made up of Jews and Romans, two groups so unbelievably opposite in values, political affiliation and in every aspect of their daily life routines that they should have been at odds, even killing one another, but they didn’t.

Now look at individuals with special needs. Last week, we had a new adult with special needs join our weekday program. He had never met anyone else in the room. He walked in and I introduced him to the group. This group of people is made up of adults who all have some form of cognitive impairment. Some are unable to speak, some have trouble moving, some don’t hear well, all are unable to hold down jobs or live alone. Most don’t have a lot of social opportunities outside of our group. Ten minutes after the new person’s arrival, he walked over to me, gave me a hug and said, “I love it here! You guys are my family!” The next day, his mom called me to thank me and said that after 50 years of her son’s life, he found a place to belong.

No one in the group asked him what his political affiliation was. They didn’t ask if he liked women or men. They didn’t ask him what kind of clothes he wore. They didn’t ask why he looked a little different. They simply saw someone who wanted to be a part of their group, so obviously he should be. Then, they spent 10 minutes asking him about himself and really listening to what he said. They loved him from the moment he walked in the door simply because he was a person and people deserve love.

What do these two groups have in common? Neither the first century church or our individuals with cognitive impairments have the time for or the luxury of debating unimportant issues. When people need one another for survival, whether it be physical or emotional survival, there isn’t time to argue and disagree about things. Paul even warned the first century churches not to fight amongst themselves and let little things get in the way of the gospel. When you are persecuted by the world around you, you band together. Race, gender, financial standing don’t matter when you need one another so desperately.

So what do both of these models say about the way church should be done? First of all, they tell me that if there is any type of person who walks into my church that I don’t think should be there, I am doing Christianity WRONG. Second, they show that nothing about us other than the fact that we are made in the image of God has any bearing on our value and our need to be loved. The Bible calls us to love like Christ and also tells us that Christ loved us so much that He gave His life for us. Unless we are okay with ignoring one part of this or the other, there is no way that we can promote hate toward anyone and still be followers of Jesus.

I hope that no one hears me saying, “Love the sinner, hate the sin.” To me, that phrase has become a way for Christians to ridicule people who they disagree with but still feel good about themselves. If we can tell ourselves that we love people but just hate what they do, we aren’t getting away from all of the judgmental attitudes that non-Christians attribute to us. We need to change the ending and simply say, “Love the sinner, because we are all sinners who need Jesus.”

I know that some people will take this to mean that I think we should just be tolerant of everything and that there is no real sin or that everyone should just do what feels right to them. I absolutely believe that there is real sin in the world. I have my own strong opinions of what is right and what is wrong. But here’s the thing, it is not up to me to decide who is worthy to receive the gospel and who isn’t. It isn’t up to me to tell people that they are intrinsically bad. It is up to me to be the hands and feet of Jesus in a hurting world. The worst sin that I could think of would be to use my words or to live my life in such a way that if someone found out that I was a Christian, they wouldn’t want to be one.

The sad truth that seems to be very prevalent in churches today is that if you agree with everything that they stand for, you’re good to go. You get to go to heaven. And since you have it all together, you can condemn those who disagree with you. Once people agree with you and fit in, they can come to your church as well. But there are multiple problems with this.

First, it means that we are putting petty differences on a pedestal. We are taking the small things and making them big. For goodness sake, we can’t even get away from speaking badly about other Christians who are from different denominations, let alone talking about non-Christians.

Second, condemning others for their faults means that we are assuming that we have it “right.” We know exactly what the Bible means, how to interpret it correctly and are able to follow it word for word. As I said before, I have my own definite definitions of what I believe is right and wrong. But I also know that I am probably wrong about some of it simply because I am human. I also don’t think that being wrong while being genuine in my faith will keep me out of heaven. Assuming that any one group of us is totally correct is astoundingly arrogant.

Finally, if we are going to church to be comfortable, we are not living like Jesus. Working with families with special needs has taught me that my walk with Christ will be painful. Not only that, but it should be painful. Somehow we have bought into the lie that once we choose to follow Jesus, He will make our lives easy. Oh my friends, I will tell anyone and everyone who will listen to me that Jesus is my savior and that He died for me. He is the reason for my life. He is the only one that makes this world make any sense at all and I love Him with my whole heart. But He has made my life so much more complicated and difficult.

Why are we so scared as Christians to let pain, adversity and sin into our little church bubbles? That’s what the church is there for. Why can’t we see that we are as weak as we perceive our friends with special needs or as the persecuted first century church? Because we are born sinners, we must realize how desperately we need one another no matter our race, gender, orientation, political affiliation or anything else.

Church is the place for broken people to love one another to Christ. Church is the place to belong when we are hurting so badly that we can’t bear to walk alone anymore. Church is the place for us to love one another unconditionally when we agree on NOTHING but our need for a savior. Church is the gospel with flesh and blood.

My Son was Dead, and is Alive Again

I remember equating our first time meeting William to how God must feel the first time we ask Him to come into our lives and make us new. The joy mixed with the grief of loving someone so much that you would do anything for them was tangible and it left me in awe of God and His plan for us. The first eight months of William’s life was pretty smooth sailing. We thought it was a bit difficult, but we had no idea what was coming.

When Will was diagnosed with his seizure disorder, my personal grief and depression was intense to say the least. William basically disappeared. We were left with a baby we didn’t know and memories and photos of the old Will that, although they should have been happy, increased my grief all the more. I was conflicted with the loss of my son coupled with the fact that I still had this stranger to care for. His care was so much harder, and I found myself slipping further and further away into my grief. At the time, I was so angry with God that I refused to talk to Him. I turned away. How could He love us and let us go through this? How could I love Him after He didn’t save my son?

William has been seizure free for two glorious months. This week, he began to roll over again and hold his own head up. His beautiful smile lights up our day. William is back. Just as God taught me about salvation when William was born, today He is teaching me about faith. About 18 months ago, I prayed that God would increase my faith no matter what it took, but I had no idea what that meant. I must be difficult to teach, because God had to take me through the deepest, darkest year of my life in order for me to learn to trust Him. I don’t believe for one minute that God makes bad things happen to us, but I do see that through the bad, He brings understanding and makes things new.
I have been pondering the story of the Prodigal Son for the last few weeks, equating it to losing who William was for a while and now getting him back from the brink. But something felt off. We didn’t actually lose him. We felt like it for a while, but William was always there. He was just too sick to reveal himself. Why did God keep bringing this story to the front of my mind?

I realized today that this wayward son story was mine, not William’s. When I asked God to increase my faith no matter what it took, He knew that I needed radical change in my life. The only way to increase my faith was to shatter it and to rebuild it from the ground up. I have been the prodigal child for the last four months. My anger with God was enough to make me turn my back on Him. But He was in relentless pursuit. As I grew angrier, more people told me that they were praying. As I tried to skip church on Sundays, my kids asked to go and I couldn’t say no. As William got better when the doctors said that he wouldn’t, God’s healing was the only answer that made sense.

As Will continues to get better and stronger every day, we are blessed and delighted by seeing his “firsts.” The first time he smiled, the first time he rolled over, the first time his beautiful almond-shaped eyes followed me across the room. The funny thing is, he did all of these things months ago. But God has been gracious to give them to us again. And after being told that they are unattainable, the second first time is even more amazing than the first first time. Does that even make sense? Not to me, but to God, absolutely! Seeing impossible healing right in front of you, in the most precious person in your life makes disbelief in God a ridiculous notion. Through God giving us this amazing time of healing in Will’s life, especially after all that we have been through, He proves Himself over and over.

It took a year of this special needs adoption journey, with all of its ups and downs to find my faith. I thought that after asking God to increase my faith, He had instead destroyed it completely. But looking back, He was there all along. I was the one who had left. The hellish months of worry and grief are over for now, but we don’t know if they are gone for good. What I do know however, is that if they come again, God is in the midst of them. Not only that, He is there now, preparing a way for us to make it through them if we must.

I am unshakable in my faith. I’ve seen so much proof that nothing can convince me otherwise. God granted my naïve yet sincere request to be changed, just not in the way that I expected or would have chosen. Will turns one next week. I don’t even know how to put into words how I feel about that. I have spent the last year trying to save his life in any way that I can, but he ended up saving mine. Thank you God that you give us what we need and not what we think we need. Hallelujah and amen.

Dear Seizure Disorder…

Dear Seizure Disorder,

I hate you. I can’t begin to describe how much I despise you. Our son was already facing a host of challenges when you showed up and took over our lives. You added meds, treatments and long hospital stays. You took away my son’s ability to sit up, roll over, kick his legs and hold up his own head. I hate you.

As an adoptive parent of a child with Down syndrome, I thought we were ahead of the game. We expected some challenges and jumped into therapy and skipped the surprise diagnosis discovery that biological parents have to go through. But then the seizures showed up and we were thrown into the deepest, darkest places in this giant ocean of grief that we try to keep our heads above the waves in. We watched as our son slowly deteriorated. Now, instead of wondering how long it will take him to reach milestones, we wonder if he ever will. Our talks have gone from therapy equipment to G tubes, tracheostomies and vesicostomies.

But here’s the thing you horrible disease… you won’t win this war. The reason? The more you throw at us, the stronger you make us. People outgrow you by age 3 and my son is almost 1. You have two years to do what you will. In that time we will fight you with meds, with diet, with therapy, with sheer will and endurance. Some day you will give up and we will be left standing stronger than we ever thought we could be. And you know what? Our son is starting to move his legs again. He is trying to lift his head, he is full of smiles that we haven’t seen in a long time. You have won the last few battles, but we will win the war. He is coming back to us as you disappear.

So I say to you seizure disorder, I will NOT let you define my son or my family. We won’t live our lives in fear of you and we won’t change our dreams and our goals based on what you might do to us. Someday, the horrible video of you on my computer that the doctors make me keep to share with your therapists will be deleted. I won’t give meds, I won’t grieve in your wake and I won’t stay awake wondering what you took from us as our son sleeps you off after each of your attacks.

I hate you, seizure disorder and I always will. I’m not sure that I will ever come to accept you as a part of my life. Instead, I will fight you and count the years, months, weeks, days, minutes and even hours until you are gone. I will not thank you like many people do, for teaching me something along the way. You are nothing but trouble. I don’t feel like a “better” person because I have faced you. But, I do thank the thousands of people who have prayed with us to eradicate you, to make you disappear. I have learned through them that we are loved so much and that you can’t change who we are. I have learned that God doesn’t leave me in the worst of my circumstances and that He can make some good come of even the situations as bad as the ones you create.

So until we meet again, I will not let you take up residence in my thoughts and keep me awake at night. It’s only a matter of time and we are coming to get you. We will win and you will lose. We will follow our dreams and make goals and nothing you try to do can stop us!

Sincerely,

Will’s Mom